This is my blog about living with chronic illness. I have Ehlers Danlos Syndrome, and POTS. One thing I refuse to let illness take away is my funny. It's about all I got let. Laughter gets me through things, and helps me get out of things. So come laugh with me. Why not?
Tuesday, April 30, 2013
30 Days 30 Posts A Day Late National Health Blog Post Month
So I read on another of my friends blog about the National Health Blog Post Month. That she will be writing a blog post a day. I thought to myself at 2:30 am two things. The first was this is great! I should so do it too! I should write a post right now. It would be a little late, but it's still day 1 I can catch up. Thought two. She is damn nuts! She has brain fog, chronic fatigue, and she struggles with Dysautonomia just the same as I do. Plus she is just like I'm. She is a mother, and wife first. Even when we don't feel like we are a good wife, and Mom hubby, and kids come first. So we often don't have energy to write. As what little energy we have is spent on our families. Then there is getting our Swiss Cheese Brains to cooperate, and not keep wandering off to LaLa Land. That is a task of its self. So ya you guessed what I did next? I finished reading her blog post, and went to bed. Snug as a bug in my cozy bed.
My doctor tells me to stop reading, playing with my iPad, and phone in bed. Even though I tried to sleep I couldn't stop thinking about this blogging thing! My brain wouldn't SHUT UP!!!! This exactly what my lovely doctor warns me of think so? Ummm ya! This is why he says to only sleep in my bed. But I was to tired to write anything, and my eyes where all hazy from a migraine. Anything I wrote by then it was 4:00am would have consisted of nothing more than rating bedsheets, popcorn, and anything poop. Because when all else fails I rely on poop jokes to save me. So I opted to wait until a fresh new day.
Heck ya that in itself was a day! My preschooler had a field trip. That they did not warn me would include about 5miles walking. My knee was dislocating, and my ankled did twice. It got to almost 90 outside even though it's November. Then this field trip included said games being played with adults. Well allot of standing. 2 hours worth, and I have POTS! They had none out there. I took one bottle that drank in an hour. As us POTSies drink some massive water. So I was HOT! Heat, and me is not good as I don't sweat on 75% of my body. But I can't let on all this to my little man. He is there to have a good time so shall I. I mean who wants to call attention to themselves? Not me.Not for a weakness i guess. I know I know it often bites me in the butt. My little man is an EDSers too, and his knee hurt also. Even though he said "no mama it doesn't" I think if he thought he said yes I would take him home. Mommy has medicine in her purse if he needed it, but he insisted he didn't. But as soon as we got home "MOM my leg hurts!" But he had a good time, and I enjoyed taking him. I would do it again. My best friend is in town for his birthday, and I made him his favorite dinner. Even though I was tired. I don't get to see him much.
I even had to grocery shop. That in itself wears me out. I got so upset when I didn't have enough money for my meds. On top of it all my hubby got told last week his health insurance is going up. They also raised the deductible, and out of pocket maximum. They didn't give any of the employees a cost of living raise. Only a bonus that gets gift taxed at almost 50%. This was already after going to a every other 4 day work week also. Which resulted in about a 1000 pay cut. Yes I'm happy he has a job. It could be worse. But all this news had even happy go lucky me pist off. Crying in my lactose free milk.
I didn't know what to do? Where to turn? How do we manage? I pride myself in having a somewhat funny blog, and Facebook page. I try not to post sad, gripy melodramatic stuff. I know it happens in illness, and I by no means am immune I just don't want to blog about it. There are enough people who do. I want to bring happy into your world of chronic illness. Even when we feel there is none left. So as the old saying goes when you don't anything nice to say don't say anything at all. So when I'm silent my world is crap.
So here in my world its kinda shaky right now , and here is this 30 day blog thing. Also so many people during this month post things they are thankful for as it's the month of Thanksgiving. So I got an idea. I thought I will combine both! Another good friend told me how she has a notebook, and everyday she writes a few things she is thankful for. She tells me that lifts her spirits. I will blogmyself out of this funk, and maybe help someone else too.
What do I have to lose other maybe this dark cloud over my head? Because man this doesn't make for good stories, poems, or blog posts. So 30 days here I come!
Today I'm thankful for: A nice home to live in with an amazing view. My best friend. Whom came to visit me for his birthday. I'm alive. Being able to take my son on his field trip.
My 4yr old EDSer took this. He knows what I like. He also knows how to make his Mama laugh.